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Old 02-16-2011, 10:57 AM   #1
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Seems like MS to me, but still undiagnosed HELP!

Hi everyone,

I will try to keep this as short as possible with such a long story, so if anyone has any questions it might just be something that I forgot to include. I am hoping you will read my crazy story and give me your insight as I am so frusterated at this point i don't know what to do.
I started having symptoms at the end of 2008 that lasted for four months and then went away. It was mainly vibrations in my legs when I went to bed, numbness in my toes and pelvic region, and occassional electric shock sensations in my legs. After the syptoms subsided I had an MRI done that was 'clean' besides a cyst in my left frontal lobe. Neurologist said it could be an infection in the spinal fluid and possible MS at this time and hopefully it doesn't come back.

In Jan. of 2010 I began to get the electric shock sensations again, numbness returned but moved throughout my body, mainly the hands, lips, feet and pelvic region again. and the vibrations at nTight also returned. Over the next four months the tiredness and mental fatigue got so bad I could barely work. Suddenly in April I could barely climb the stairs to get into work. My legs felt clumbsy and tired. I noticed daily that I had begun to trip on the stairs more and more as the weeks went by that led up to this day. Soon after I was overcome with an intense dizzyness that made it hard to even stand. felt like I was drunk. The dizzyness lasted for 3 weeks.

During this 3 weeks I also developed a tremor in my hands and it felt like my head was bobbing around. (others could not see or feel this so it actually wasn't but just felt like it) One evening my vision went really dark and fuzzy. (like a fuzzy tv screen. I was rushed to the hospital and the vision returned to normal. I was told this was a panic attack? For three weeks I had intense vision disturbances of things moving, floor tilting, etc. Severe pain up back of neck. Bowel and bladder problems. (bowel scope and eyes were checked...both showed nothing)

After 3 weeks the majority of the intense symptoms had subsided. I was left with a mild dizzyness, the vibrations in my legs (ongoing), mild tremor that becomes extreme with the smallest amount of stress or emotion. Occasional neck pains. Hard time urinating still exists. Extreme tiredness comes and goes. When it comes I can spend up to 3 days in bed with physical exhaustion. One numb spot at the base of my spine that has been there since 2008. Numbness in hands and feet and electric shock sensations come and goe but are quite infrequent and do not last very long.....under 10 mins.

I went to an MS specialist about a year ago and he said it was not MS but symptoms of Bipolar disorder which I have had for approximately 10 years. I went for additional MRI of the head and cervical spine with enhancement. I just received the result as 'clean' with 3 abnormalities they say are 'normal' for my age.

I have had bloodwork done for Lymes, thyroid, vitamin B def. and other normal bloodwork which all were normal/negative.

I am on Lithium for the BiPolar and have been since the onset of the disease. My family doctor said that he thinks this could be from long term use of the Lithium. They are going to switch me to something else and see if it helps. He admits that Lithium does not explain all the symptoms I have experienced. I am going to my phyciatrist today to plan to do this. He does not think the symptoms I have experienced are due to the Bipolar or the Lithium except the tremor.

I am going to request going to see the neurologist I had seen back in 2008 and see what she thinks of this mess. I do not think that this was caused by the Lithium, but am willing to try anything at this point. The second neurologist I had seen has also suggested a spinal tap be done, but my physician seems reluctant to order one. I guess I will see if the switch in pills makes a difference, but not all that optimistic.

This sure seems like MS to me from all the research I have done, but nothing is showing. This is son frusterating to be left in limbo. Any ideas would be greatly appreciated! I just want to know what this is so I can get on with my life.

 
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Old 02-16-2011, 12:06 PM   #2
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Re: Seems like MS to me, but still undiagnosed HELP!

Welcome. As you have bipolar concerns, a neurologist would certainly have to weigh them along with the effects of long-term Lithium use. I would not wish MS upon you and hope your doctor can change your meds to resolve your issues.

There is a bipolar forum on this web site. You might wish to post there as there may be others who have gone through the issue of long-term lithium use. Please do give us an update and come here again with your MS questions.
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Old 02-16-2011, 12:40 PM   #3
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Re: Seems like MS to me, but still undiagnosed HELP!

Thanks for your reply.
Posting on the BiPolar forum is a great idea. You are right, maybe others have had similar symptoms. The symptoms do still seem like they are similar to those of MS. I am going to carry through with the spinal puncture if the med changes don't make a difference. Would do just about anything to get to the bottom of this! Thanks again for your suggestion.

 
Old 02-16-2011, 01:55 PM   #4
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Re: Seems like MS to me, but still undiagnosed HELP!

Hello jo727,

Do you have blood work done every so often to check your Lithum Levels and to make sure Lithum isn't causing any other health issues?

Some of your symptoms could be attributed to Lithum --- Tremors, vision, bowel and bladder problems, muscle weakness, and drowziness/fatigue.

I am a bit concerned about your MRI being clean yet there are 3 abnormalties which are normal for your age. Unless you are getting quite old I would be questioning that statement.

I hope you get answers soon.
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Old 02-16-2011, 03:03 PM   #5
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Re: Seems like MS to me, but still undiagnosed HELP!

Hi Snoopy,

Yes, I have had regular bloodwork done to test the levels. They have always been low as I am on a small dosage. 900mg. I just got back from the pshyciatrist...his exact words were, 'this is ridiculous' He is going to take me off the lithium for 2-3 months even though he feels it is highly unlikely that this is the cause of the symptoms but said it will prove it to the doctors. He doesn't feel that this is a pshyciatric problem at all and that I am not the first one he has seen that is going through this. He said that we just have to keep pushing back until the medical feild finds the problem.

I totally agree with the MRI thing. That bothered me too. The problem is the two were done by different neurologists and have never been compared. I am going to get a referral to the original one I seen in 2008 and bring this up with her. Hopefully she will help me get some answers. The only reason I went to a new one was to avoid the 18 month wait to get in for one here in the Kootenays. I also feel that a spinal tap wouldn't hurt.

Thanks for your input!

 
Old 02-16-2011, 03:18 PM   #6
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Re: Seems like MS to me, but still undiagnosed HELP!

I don't want you to think I meant to suggest your symptoms where Psychiatric in nature. It can be very difficult for doctors to see beyond the Psychiatric problem and medications when presenting with symptoms that, to them, are not making sense or clear cut.

Going off Lithum will be helpful in weeding it out as a cause, although, I am sure it won't be easy for you...take care of yourself during this process.

I do agree with your decision to have your original Neurologist compare the old and new MRIs and to hopefully be able to explain the 3 abnormalties.

Maybe it's just me but clean MRIs and abnormalties just don't go together
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Old 02-16-2011, 03:36 PM   #7
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Re: Seems like MS to me, but still undiagnosed HELP!

Hi Snoopy.
No offence taken by anything you had to say, all and any input is truly appreciated. I was just telling you what the pshyciatrist had to say as I just got back from there. Before I talked to him today I was thinking that it might be a pshyciatric problem as well as they can't seem to find anything in their testing.
I will follow up with the neurologist asap...in this area that may take 6 months. Would be nice if going off the Lithium is the answer, but I do have my doubts. Will let you know in a couple weeks after I am totally off it. Thanks again!

 
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